Endometriosis: ‘It kind of hit me that I'm 35 and I've had a hysterectomy’

Ahead of a film screening and panel discussion they are organising, two Irish women who advocate for those suffering from endometriosis share their own experiences

Lisa Claire Walsh and Robyn Murray Boylan are co-directors of Her Voice Project, an online community which offers support and connection for endometriosis sufferers. 

On the night of a work event, endometriosis sufferer Lisa-Claire Walsh was hospitalised because of debilitating pain. Once she told her manager, who had never heard of the condition, she said she was met with compassion and flexibility.

Being able to work remotely has been a “massive relief” for Ms Walsh, 28, who is often in excruciating pain.

A chronic condition, endometriosis causes cells similar to the lining of the uterus to grow outside of it — in places where it does not belong. The condition is not only a ‘period disease’, it is an inflammatory disease that can also affect other organs such as the bladder, bowel, and ovaries.

Lisa Claire Walsh: ‘Once my manager knew the whole picture, she was so much more compassionate. I think it’s about mutual respect.’

One in 10 women reportedly suffer from endometriosis. There is still no cure and many women say they feel their plight is dismissed, with the average diagnosis taking approximately nine years in Ireland.

Ms Walsh’s workplace experience, however, has been very positive. “My employer has been very good. If I feel like I need the extra flexibility, I’ve been able to have that conversation with them.

“We came up with a plan that I could work Mondays and Fridays at home, which is a massive relief because you know yourself when you’re symptomatic, it’s very hard, especially going into the office, it can be really draining.”

She said many people — women included — are unaware of the condition and the impact it can have.

When I came back to work even after my surgeries, a lot of people didn’t know what endometriosis was. I had to explain to them that it’s not just a bad period, it’s your whole body. 

As part of an equality and inclusion day, Ms Wash gave a talk about endometriosis in her workplace.

“I felt like once my manager knew the whole picture, she was so much more compassionate. 

"I think it’s about mutual respect and it’s really important for managers to make their employees, if they’re approaching them with a chronic illness, to feel like they’re respected and appreciated, because it’s not an easy thing to do to approach your manager and tell them.

“It’s very hard to just go about your day-to-day life when you’re living with one of the most painful conditions in the world,” she said.

'I could barely stand'

It is a sentiment shared by Robyn Murray Boylan, who underwent a hysterectomy last September at the age of 35, as she suffered from endometriosis and adenomyosis. 

The latter occurs when tissue that normally lines the uterus grows into the muscular wall of the uterus.

Robyn Murray Boylan: ‘It [having a hysterectomy] wasn’t an easy decision, but I kind of just felt lucky that I already had children.’

Prior to her diagnosis, she fought for over a decade to get answers.

While undergoing excision surgery, doctors found out that she had extensive endometriosis, affecting her uterus, bowels, intestines, and rectum.

She agreed to the hysterectomy, an irreversible procedure which removes the womb, without removing the ovaries.

Ms Murray Boylan said her consultant “had tried everything” before advising her to get a hysterectomy.

“I tried the pill and different kind of blood thinners to try and stop the bleeding because I was severely anaemic,” she says.

“It was actually so heavy that I would have to wear two maternity pads. 

"I couldn’t wear a tampon, unfortunately, because without being too graphic, the clots were the size of my hand, so they would lodge and pool on top of a tampon.”

Her consultant was concerned about her iron levels and said the only “real option” for her was a hysterectomy, to stop her from being severely anaemic.

Thankfully, I already had two children, I started my family very young. It wasn’t an easy decision, but I kind of just felt lucky that I already had children.

“But then, it has kind of hit me in the last few weeks out of recovery that I’m 35 and I’ve had a hysterectomy. It does feel strange, I can’t explain it, but it’s definitely more emotional now than it was when I had it done in September,” she said.

Before the surgery, she had to plan her schedule around her period, as the pain was so debilitating.

“I remember going to board meetings and I could barely stand and I’d have to go and sit down. 

I actually got to the point where I couldn’t walk because the blood was that heavy and the pain was so bad.

In a bid to raise awareness of the condition, Ms Walsh founded Her Voice Project, an online community which offers support and connection for endometriosis sufferers. She works alongside Ms Murray Boylan, who is co-director of the initiative.

On February 8, they will screen the film Below The Belt at The Maldron Hotel in Dublin Airport, alongside several speakers and a panel discussion, to encourage women to share their experiences.

• To discover more about Her Voice Project, email [e-mail] or visit @hervoiceproject on Instagram. 

• You can learn more about the event in Dublin on February 8 and book tickets by clicking here on eventbrite.